This blog follows the progress of Milo & Madeline Stiles, born in June 2008 at 25 weeks, 2 days gestation, for their friends and family and anyone else who'd like to know about life with premature kids.
Please visit http://www.altabatessummit.org/nicuedu/fac.html and consider making a donation to assist NICU families at Alta Bates Summit Medical Center.

Saturday, September 28, 2013

Hello again folks. You probably weren't expecting me to be posting again so soon, but I wanted to share a link to a radio show I heard today. It was on Radio Lab and it was basically an hour focused on the story of little girl born at 23 weeks 6 days -- that's a week and a couple days even sooner than Milo & Maddy. That doesn't sound like too much, but it is for babies born before 28 weeks (in particular) every day makes a tremendous difference.

It's a great story and one that does a far better job than I can in detailing what life is like for a NICU family. You'll hear about the type of magical thinking that interrupts the thoughts of parents -- the kinds of thinking that we try to use to guide our decisions and create meaning out of a senseless ordeal that our children our forced to endure.

Saturday, September 21, 2013

It's been a while, hasn't it? As you probably guessed, much has happened since my last post. Kids grew bigger and stronger; parents grew older and balder. And here's the part where I tell you all that I'll do a better job of posting more frequently on the blog... Really, I will.... Maybe.

The biggest news is that the kids have started kindergarten. How 'bout that, eh? Elaine and I were a little ambivalent about the whole thing - as I'm about to explain in excruciating detail. After all, had the kids been born on time, they would have arrived on September 26th, putting them within two weeks of the age cut off for starting school this year. Obviously, being 3.5 months premature didn't provide any kind of developmental head start. We didn't want to rush things, so we decided to have Maddy reevaluated this past spring along with Milo. (You might recall that Maddy was performing very well last year and no longer qualified for special education services.) I was all but certain I wanted to wait until next year to have the kiddos start school; as usual, Elaine was more rationale about the possibility. What can I say? I carry some childhood baggage - being the fat stinky kid for more than a few years of my childhood has left me permanently sensitive to the possibility that M&M might lag behind their peers and get teased. The special education evaluators at Alameda School District (ASD) didn't necessarily agree and they were generally unanimous in wanting the kids to start school "on time."

Milo's last day of preschool. June 2013.

We were somewhat less concerned about Maddy generally. The girl has really flourished in the past couple years and overcome nearly every obstacle that prematurity has sent her way. That said, she is still highly sensory seeking, which causes her to have fairly limited social boundaries. She likes to hug people a lot (even strangers). She's kind of a close talker which is caused by a mixture of her quiet voice and high level of enthusiasm. She is very active (ok, hyperactive), and God bless her little heart, she can be just a touch on the pushy side. Some kids can find Maddy a little overwhelming and she is also at an age where kids have really started to take notice of her Joplinesque voice. Mix it all together and the fat stinky kid buried deep in my psyche begins stuttering with neurotic anxiety -- and yes, I had a bad stutter too.

M&M at the March of Dimes Walk - April 2013﻿

It's fair to say we were most worried about Milo (me especially). After all, the kid is between the 14th and 20th percentile on height and weight; he can be a bit impulsive and emotional due to his IVH (yes, more than the typical 5-year-old); he often played alone at the Coast Guard Island (CGI) preschool unless younger kids or Maddy was around; he frequently conveys his feelings by acting out scenes from various stories, TV shows, and movies he likes - which can be a little confusing to other kids and folks who don't know him. Harkening back to my miserable experience as a chubby stinky kid with a bad stutter and terrible temper (yeah, I had I temper problem too), I worried a lot about other kids picking my boy. Last thing I wanted was for him to hate school as much as did and end up in weekly fights.

Milo - Stinson Beach - June 2013

So were my worries rationale? Based on my completely biased personal experience and observations as kid, it was (and is) my feeling that cute, pushy, blonde girls tend to get a bit more slack in life than short, brunette boys with mild strabismus and a penchant for the theatrical. The very thing that occasionally gets Maddy in trouble with others (her pushiness and assertiveness) also helps her to quickly connect with any kids who are receptive to having a new friend. It's also interesting that Maddy doesn't really seem see her voice as very different from other kids - even though she has told us about kids who won't play with her because of it.

M&M quickly make a new friend at the Oakland Zoo - July-ish 2013.

﻿

Despite my skepticism, it was tough to quarrel with the logic of the special education evaluators; they made several good arguments. The fact was that Maddy was no longer receiving services at all (she no longer qualifies) and she had been attending a regular preschool full time on CGI. Frankly, Maddy was slipping through the cracks of the system. On one hand, she was academically and behaviorally strong enough that she didn't qualify for special education support. On the other, Maddy still has a number of sensory and attention issues that challenge her abilities. Although counter intuitive, starting kindergarten would mean Maddy could go on to a 504 plan and start receiving some support for her hyperactivity and peer interactions. No such 504 assistance is available in private preschools -- at least not ours. For his part, Milo was academically beyond what his 1/2 day special needs preschool was offering and he was also attending the CGI preschool for the second half of the day. Staying put might mean languishing for a year for no good reason. In terms of academics, both kids were basically on target with some exceptions (e.g., Milo in receptive language and Maddy in math concepts). Both were otherwise ready to move on, and the special education folks made another good point: enroll the kids now to ensure they'll both get some level of support.

M&M and their Coast Guard CDC preschool classmates - July 2013.

How did the kids feel? Although Maddy was more enthusiastic than Milo, they both looked forward to starting school. And that's what we decided to do. The worst case scenario is that they repeat kindergarten and get an additional year of reinforcement. Is that a bad thing? Not so much. The usual main concern is that the child will be stigmatized if they repeat, but repeating kindergarten is more and more common, and besides, there's a good chance we'll move before the kids enter first grade anyway. If there is a stigma it'll be short lived, and it's also possible the kids will do fine and promote to first grade with their peers. For those of you interested, there is data out there that shows that kids who repeat kindergarten are much more likely to have lower performance and behavior problems than kids who start school later or promote on time. However, once you control for the usual factors -- socioeconomics, demographic, etc. -- the performance distinctions are eliminated. Look here for more information.

Happy kids on their way to Back-to-School Night - August 2013

Kindergarten has turned out to be a pretty wonderful adventure for them both. They have great teachers and I really don't think I could have imagined a better school. It's pretty surprising how much of a step forward they've taken in just the first few weeks. So far it looks like they were ready.

So what else happened? Lots more! We paid a visit home to New England and visited family and friends. We did a couple camping trips here in Cali, and of course the usual glut of other summertime activities. Milo had another surgery -- hopefully the last one; Maddy learned to ride a bike. Below is the - more or less - chronological account of the fun along with my usual insightful and witty commentary.

Kiddos hanging out with good buddies here in Alameda. Right to Left: Mason, Robert, Milo, Emma, Sierra, and Maddy. You'll probably recognize the above crew in many of our photos on the blog. All the kids are children of other Coast Guard families we are close with out here.

Classic Maddy action shot. Alameda, June 2013.

Though they occasionally fight, the twins are very close. M&M at the Oakland Zoo - Summer 2013.

Family ice cream run at Tuckers in Alameda. Summer 2013.

First family beach trip of the year. Stinson Beach, May/June 2013. Although Stinson has developed a reputation for being a bit sharky, it's one of the prettiest beaches in NorCal. Since the kids generally don't go in much farther than knee deep, great white attacks are unlikely.

Maddy frolicking at Stinson.

﻿

I love this picture. Maddy looks almost like a teenager until you realize she's flying a kite.

In June, we loaded the kids up on a Southwest flight complete with clever flight attendants, and headed back to the motherland. We hit some of the kids favorite spots from last year, but we got to spend a lot more time with my sister's family in New Hampshire on this visit.

﻿

The first stop: Mystic Seaport. Milo, Maddy, Cousin Zack, and Uncle Nate checking out the beluga whales. June 2013.

Maddy and Cousin Zack at the stingray tank.﻿

Milo, Grandpa, and Maddy petting and feeding stingrays.

M&M at the Peabody Museum, New Haven, CT. June 2013.

M&M with Grandpa at the Peabody.

Looking silly: Milo, Cousin Josh, Maddy, & Cousin Jacob. June 2013.

M&M figuring out video games together with their cousins. Mirror Lake, NH. June 2013.

M&M loving their first ride on full size horses. Castle in the Clouds, Moultonborough, NH, June 2013. A happy coincidence, the kids took their very first pony ride at a stable up near Jackson, NH during our vacation last year - see here. Despite being a couple hours away from Moultonborough, the woman with the red hair (on the right) was the very same person who assisted us that day.

Above: The kids join Aunt Heather, Uncle John, and Joshua and Jacob for a carriage ride. This picture is unique because it's the only one I was able to locate that actually has my sister in it. You'd think she was Amish the way she avoids cameras. Castle in the Clouds, June 2013.

Milo waits his turn for the Polar Coaster. Storyland, Jackson, NH. June 2013.

As our good friend Jeff Ugino has pointed out, if you bring your kids to New Hampshire without taking them to Storyland, Child Protective Services might have to get involved. I like long lines and junk food as much as the next guy, so why not? Kidding... Storyland is fun. It was even more fun since Milo loved the roller coaster there, which was reasonably legit. We ended up riding it 11 times throughout the day. When we weren't riding the roller coaster, Milo would ask about it about every 30 to 60 seconds. "Daddy, can we go on the roller coaster?" "No pal, not right now." [30 seconds later] "Daddy, can we go on the roller coaster now?"

Maddy was pretty much glued to Ella for the day. Storyland, June 2013.﻿

A rare shot of Mom and Dad in the same photo. Storyland, June 2013.

Maddy joins the Uginos for a spin on the tractor ride. Storyland, June 2013.

Aunt Antina, Zack, and Maddy. Walden Pond, MA. June 2013.

M&M with Mom at Maudslay State Park. Newburyport, MA. June 2013.

No visit to New England would be complete with a visit to the Clam Box in Ipswich, MA. And no vacation would be complete without a tantruming child. As I recall, this photo was taken by a nice stranger who did his best to capture the magic. What you're missing is me saying, "come on pal, smile." The response was a very shrill, "No! No! I don't wanna be in a picture!"

We stuck around New England for a couple weeks before heading back to Cali. Overall, a very nice trip. Elaine was extra tolerant of the fact that I brought my road bike along and rode almost every day of the vacation and even squeezed in a couple races with my Stage 1 teammates. Good trip all around!

In July it was finally time to break in the new family raft with the Phillips family. Above: Maddy, Sierra, Milo, & Mason eat a quick snack before putting onto a class II section of the South Fork of the American River. It was a beautiful hot day on the river and much fun was had by all. ﻿Well, mostly...

﻿

Above: Quick picnic stop on the river. The C to G section, as it's called, is about four miles long with plenty of fun, bouncy class II/II+ rapids. Everything was going great until we hit a larger wave known as Barking Dog. Milo got splashed and decided that death was imminent. He spent most of the rest of the trip glued to Elaine and me. I don't get it: the kid loves roller coasters and loves to hold his breath underwater - which he can do for an impressive amount of time. Apparently mixing those two things, not so much. Luckily he seemed to recover his nerve for another raft trip later in the year.

Kite Fest - Berkeley Marina - Summer 2013.﻿

One of the highlights of the summer was our camping trip to Downieville at the end of June. We got together with our friends the Tama family and some other folks for a pretty epic three vacation up in the mountains. I took probably 100+ awesome pictures on my iPhone. Unfortunately, the phone is sitting somewhere at the bottom of the Yuba River at the moment. The above photo is all that remains - I snapped it with another phone on our last day of the three day trip. Hope to make it back next year!

Now for some cinema Maddy. You might recall that Maddy began learning to ride a bike about a year ago, but she promptly gave up on the bike when she received a scooter for Christmas. During our trip to Downieville, all the other kids were zipping around on their bikes but Maddy's little bike with training wheels kept her from keeping up. That was pretty much all the incentive she needed. Within a week, she was riding on her own. That's the positive side of peer pressure.

We also spent time hanging out at home. Above: M&M playing with their Stomp Rocket. Probably one of the simplest, coolest toys around. (Thanks Uncle Nate.)

Poor kid... You may recall last year when Milo was wearing his eye patch. Unfortunately, the treatment it helped but not enough. In July, we brought Milo in to have his strabismus treated. He was not real happy about the prospect and the staff had to give him "goofy juice" to help calm him down a bit. Worked like a charm - just wish there was a enough for Mom and Dad too.

We took camping trip #2 with our good friends the Cowells in August up in North Lake Tahoe. Warm days, chilly nights, mountains, rivers, the Lake and good company. Doesn't get any better. Above: one of several awesome camp meals.

Milo gives rafting another shot along with the Cowell family. Truckee River, August 2013. Things went much better this time around. Despite some initial nerves, Milo braved the biggest rapids on the run without any trouble at all. The other kids (and parents) had a great time too. ﻿

M&M, Robert & Emma and two new friends at Sugar Pine State Forest Camp Ground. August 2013.

Above: The kind of photo that parents wish for. A last hug before heading to the car for the four hour drive back to Alameda. Tahoe City, CA - August 2013.

Above: Aboard the Alameda Ferry in route to the kids first visit to the Exploratorium in San Francisco. September 2013.

M&M hiding out in one of many cool caves at Rock City, Mt. Diablo. September 2013.

Another Rock City photo. Really fun spot -- highly recommend it.

A relatively rare hot day in Alameda. Backyard pool play time with neighbor and good friend Chris. September 2013.

Maddy and Mason have fun in the pool. Alameda, August 2013.

M&M take their very first solo (non-adult accompanied) roller coaster ride. Happy Hollow,

San Jose, CA - September 2013. Notice M&M are sitting with other kids. It was nice to see them quickly make friends with a few other kids who were also getting to ride alone for the first time. Me and the other dad got to sit back, watch and snap some pictures.

Dad cam footage of the kid's first roller coaster ride without an adult sitting next to them. Definitely a strange feeling to walk up to the ride and see that the kids were tall enough to ride alone. Liberating too. So nice to not have to cram myself into a child's ride nine times in a row.